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Tosa Pours Out Support with Concert for 6-Year-Old Kaylen Birk

The grace and goodness of a community vaults forward to help a family and child facing a brain disease thought to be incurable – but for which there may now be a hope, however slender.

 

A parent's nightmare is getting a phone call and learning that your child has had an accident and been taken to the hospital. Your heart pounds as you race to the emergency room, fearing the worst, praying for the best.

Kathy and Jon Birk experienced it April 3 after their daughter, Kaylen, had a hard collision in kindergarten gym class at .

Kaylen, 6, was taken to Children's Hospital, where she was quickly treated and released for a broken nose and a mild concussion.

That shocker would soon enough have become the stuff of lore that a family could learn to laugh over for years to come – "The fright you gave us!" ... "That's why you have that funny bump on your cute nose."

If only it had ended so. It didn't.

The next day, Kaylen seemed "off" to her parents. One side of her body appeared to be acting differently than the other, out of sync. Perhaps that concussion was a little worse than thought.

The Birks were rapidly right back at Children's, where Kaylen was given CT and MRI scans. And suddenly, a mere concussion would have seemed a godsend.

The scans revealed an aggressive tumor in Kaylen's brain stem. It's called a "diffuse infiltrating pontine glioma." A DIPG. It's inoperable. It's generally considered incurable.

"It was a devastating diagnosis," said Kathy Birk. "So huge."

'The meal train' and more

It was Easter week. "We tried to have a little quality time," Kathy said, while all around them Christian friends were savoring their season of greatest hope.

The litte they had heard so far gave them little or no hope – proposed treatments that had never worked. The condition is notoriously difficult to treat with standard radiation therapy, and survival past 12 to 15 months is uncommon.

"We didn't even know what we needed to do," Kathy said. "There hasn't been any progress in the past."

As they began to plumb the medical world for answers to seemingly untouchable, ineffable questions, other answers began to arrive at their door. The news, once out, spread fast.

"Here at home, the meal train started," Kathy said.

Every day, the casseroles came, quickly assuming a schedule, an organized effort. And that wasn't all. Friends were thinking not only of Kathy and Jon's time commitments and peace of mind, but also of Kaylen's quality of life in an enormously stressful time she was hardly old enough to understand.

"People brought art projects for her to do," Kathy said. Friends offered up their time for her. They offered up their children's time.

Learning to hope

Kathy had been about to step into the presidency of the Old Hillcrest Neighborhood Association. She was an active parent at Lincoln. She could no longer keep those commitments.

Others, like Alicia Bartz, whose son, Sam, is a classmate of Kaylen's, stepped in for her and filled the gap. They proved, for her, how much it means to be an engaged member of the community. They re-engaged in her name.

Able to focus on Kaylen's condition, the Birks discovered there was a doctor, Stewart Goldman, at Lurie Children's Hospital of Chicago (formerly Children's Memorial Hospital) who was doing clinical trials on a new drug treatment for DIPG.

"Rather than choosing something that wouldn't work, we're choosing something that might work," Kathy said. "The study drug was attacking the tumor in a bit of a different way.

"When the doctor in Chicago said Kaylen could be the one, might be the one, I decided that I would not have despair but I, too, would have hope that, yes, she might be the one."

Hope does spring eternal. Right here in Wauwatosa, the first person ever known to survive rabies – also a child – was treated, and cured, and others have since survived under her therapy. Right here in Wauwatosa, at the Medical College of Wisconsin, was the first person – a child – ever to be diagnosed and treated using whole-genome sequencing for an entirely unique genetic malady.

There is always hope, the Birks concluded. A hope. It is only that the word became for them much less casual, more knife-edged – signifying long odds, and they know it.

Kaylen recently completed the on-site phase of the trial and is now home with her parents and big brother, 9-year-old Thomas.

Hope breeds hope, and help. The Birks have family health insurance, but there are limits to anyone's coverage. There are deductibles, there are travel expenses for regular trips to Chicago, time off work, items not covered by insurance.

It was time for a fundraiser.

'Go, Kaylen!'

Kathy and Jon never asked for it. Nobody asked Kathy and Jon if they could or should do such a thing. They just did it.

Alicia Bartz and former alderman Michael Walsh, among many others, assumed impromptu roles as marketing and event coordinators, as Wauwatosa community leaders, business owners and neighbors inspired by Kaylen's story banded together to create a special summer concert in her honor.

"It's a really grassroots thing that has grown," Bartz said. "We're hoping to raise money, yes, of course, but not hundreds of thousands of dollars. It's more about saying, 'We're with you, we're behind you.'

"It's about packing that park with people saying, 'Go, Kaylen!'"

The event, titled “Koncert for Kaylen,” will be from from 6 to 9 p.m. Thursday at Rotary Performance Pavilion at Hart Park.

Tickets are $20 for adults and $5 for kids and include admission and a picnic dinner donated by Leff's Lucky Town, with tickets available in advance or at the gate.

All proceeds will benefit Kaylen's ongoing medical care. The event will also include a beer tent, a raffle and an auction featuring professional sports memorabilia and donations from numerous local businesses.

"Parents and business leaders around the community have been touched – and shaken – by Kaylen's story," said Walsh. "Over and over again, people who heard about Kaylen asked, 'What can I do to help?' This concert grew out of that community spirit and goodwill."

Music is being donated by The Differentials, a new four-man ensemble of some of Milwaukee's most established and respected musicians, including Brian Leahy of the popular local Irish band, Leahy's Luck.

Other event sponsors include , Kapco Metal Stamping, the Wauwatosa Rotary Club, the Wauwatosa Mayfair Rotary Club and Paperwhites Invitations.

Help for Kaylen is help for others

Regardless of the Birks' financial situation now, the future is difficult to see. Kathy Birk said that in the best of worlds, Kaylen's treatment may go on for another two years before an outcome is clear, and money could become an issue. But it isn't the first thing on her mind.

"We may need it, but more than that, the disease needs it," she said. She's mindful that win or lose, Kaylen's therapy can help advance knowledge of the rare cancer and its treatment.

"Even more than that, for us, personally, it's the love and support this community has shown.

"The world is imperfect, I know that. But every single face I see, there's love and support. There's such beauty.

"I feel the community's heart breaking with mine."

___________________________________

For advance tickets, email koncertforkaylen@gmail.com. For more information, visit www.kareforkaylen.com and http://www.caringbridge.org/visit/kaylenbirk1/mystory.  

Or contact: Michael Walsh, 414-477-2830; e-mail mwalsh329@hotmail.com.

jbw June 23, 2012 at 11:20 PM
That's good to hear. The community support, I mean. It reminds me of the time my parents' car was totaled by a 16 year-old running a red light in his parent's jeep. People were supportive, at least for a while, while they rehabilitated. And there was casserole. I could have used some help typing up all the notes on the years of treatment and physical therapy my mom went through to give the lawyer that was fighting to have some of the costs covered by the wealthy insured family that maimed her. We did eventually get part of the costs covered, though some of the pain and injury proved permanent. Ah nevermind, this story is a lot better than mine.
Susan Weeks June 24, 2012 at 03:40 AM
Back in the fall of I want to say of 2000 I received a phone call from an old neighbor telling me her then 4yr. old granddaughter had a malignant brain tumor that had just been diagnosed, she was a day post-op after having undergone a 16hr. surgery. Today Brit has defied all odds and is living and is a happy 17yr. old. There have been ups and a fair share of downs but since the shunt in her brain has been working to alleviate the water that most people get rid of naturally, the process would take me way too long to explain but the outcome is so far a good one. It's been close to 13 years since that day when I went to Children's to see a very sick little girl And about a million rosaries prayed and I'd pray a million more if it would help.
Judy Gustafson June 26, 2012 at 05:04 PM
I am a friend of Jennifer Picket Nebbia. I live in Bloomington, MN. I will be praying for your brave little girl as she endures her treatments. I can't even imagine your hurting hearts at this time. Know that God is with all of you who love Kaylen at this trying time. My love and best wishes to all. Judy Gustafson

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